Thursday, 17 April 2014

When will ME be taken seriously? And what can we DO?

ME is a bit of a political hot potato.

As you probably know, psychiatrists want ME and CFS labelled primarily as problems of the mind.  NICE guidelines here in UK recommend Cognitive Behaviour Therapy and Graded Exercise Therapy as treatments towards "recovery"!  (Heavily influenced by psychiatry.)

There is growing evidence that GET is actually harmful to ME patients.

In the USA, there is a move to redefine the illness using a panel of mostly non-experts.
This is the IOM contract.  It will not be a good thing.

50 ME experts have called for that IOM contract to be halted and the CCC to be adopted instead.

Here in N.Ireland we are also pushing for the CCC to be adopted.
(I am actively involved in this via the Newry and Mourne ME and Fibromyalgia Support Group)

Here is a link to our "Adopt CCC for ME in N.Ireland" petition, which I would urge you all to support (global support is welcomed).
We have almost 600 signatures in less than a month!
Adopt CCC for ME in N.Ireland petition

There is also a petition asking that the IOM contract be halted and the CCC immediately adopted. It has almost 6000 signatures collected in 7 months.  All support for this is also welcomed.
USA Adopt CCC for ME petition

For more information:

The letter from the ME 50 experts urging the adoption of the CCC:
Link to letter in Dropbox

An over view of the CCC - Canadian Concensus Criteria
Link to Overview on Invest in ME website

Finally there is a "Thunderclap" happening on 5th May (date the IOM panel next meets) to show disapproval for the IOM process.  Please consider supporting this with any FB or Twitter accounts you may have:
Link to Thunderclap sign on page

PS  Now also #May12BlogBomb happening right here on Just ME: May 12 Blog Bomb  Please join in by writing or sharing the many blog posts I hope will be published on the day!

Thanks to all who help.  It's hard to fight when we are all so ill.  At least we have computers to help get our voices heard!!